Travel Tips for the Chronically Ill

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Fibromyalgia • ME & C.F.S.
Lyme Disease • Natural Wellness

Summer is travel season. For most people, the thought of a vacation is relaxing, but for those with chronic illnesses like ME/CFS, fibromyalgia, and tick-borne infections like Lyme disease, the thought of traveling often brings stress and anxiety. For those of us who spend much of our time in our homes, venturing out into the wider world can be terrifying.

However, it is possible for most of us with chronic illness to travel comfortably and even enjoy a vacation. The tricks are to plan ahead, take care of your own needs, and stick to your normal routine as much as possible. Whether you need to travel to visit family or just want to enjoy a vacation like anyone else, here are some tips to help make your trip run smoothly.

Understand Orthostatic Intolerance

Understanding, treating, and managing Orthostatic Intolerance (OI)* has greatly improved our ability to travel and be more active. OI means that your body can’t hold your heart rate (HR) and/or blood pressure (BP) steady when you are upright. An integral part of ME/CFS, over 97% of patients have some form of OI. It also affects about 75% of fibromyalgia patients and many with Lyme disease and other tick infections. The most common types of OI in these illnesses are where HR rises when you are upright (POTS) and where BP goes down when upright (NMH), though some have rarer forms of OI.

Travel is much easier and more comfortable when you understand and manage OI. You will feel better if you stay hydrated with lots of fluids and salt (to increase blood volume – check with your doctor first) and avoid situations where you are upright for too long – standing or even sitting up.

Since liquids aren’t allowed through airport security, I bring a large, empty water bottle. For extra sodium, use powdered electrolyte mix or tablets or salt water drops (like Elete brand). Once through security, you can fill your bottle at water fountains or buy bottled water and add electrolytes. I often buy V-8 juice (loaded with both sodium and potassium) before boarding. While on an airplane, you can request tomato juice or Bloody Mary mix (without the alcohol), both of which are high in sodium.

Avoid situations where you are upright for a long time. Standing still is especially bad for OI and will leave you feeling very sick or dizzy and lightheaded. Request a wheelchair and let the airline know that you are unable to stand for more than a few minutes.

Monitoring heart rate has helped me immensely. The higher HR goes, the sicker you get. Estimate your anaerobic threshold, AT, (which is lower than for healthy people) using the simple formula: (220 – your age) * 0.6. Wear a continuous heart rate monitor and keep your heart rate below your AT to reduce the chance of “crashing.” If you are walking, walk slowly and don’t carry anything heavy. Even better, request a wheelchair or transport from one gate to another.

I pack all of this into a backpack, and carry nothing else except my wallet and a paperback book, to keep the weight down. The more weight you carry, the higher your HR will go. All of this is easier on car trips. I bring a full-sized pillow and blanket in the car and plenty of water, plus a can of V-8 juice and some salty snacks, like nuts.

Stick to Routines

For many of us, routines are what keep us functioning. It is critical to stick to your normal routines as much as possible when traveling to give yourself the best chance of feeling good.

I find it helpful to plan travel for the times when I am normally up. I don’t function well early mornings or late nights, so I try to avoid those flight times. I also can’t get through my day without an afternoon nap. In the car, I recline my seat or lie down on the back seat. It’s tougher on a plane, but I recline my seat, elevate my feet on my backpack, and use everything I brought to create my own small corner of dark and quiet. On a long air travel day, I rest/nap more than usual because I know I need to counter the extra exertion.

Similarly, once you arrive at your destination, stick to your normal times for going to sleep, waking up, resting, and eating meals. I find this particularly challenging when traveling with others who like to eat late and stay up late. I have to put my own needs first, though, or I will end up spending the vacation in my room. You can take care of yourself without forcing others to stick to your routines.

The best kind of travel for me is a road trip with our pop-up camper. We bring our home with us! We can cook our own meals so I can stick to my diet, I sleep better in the camper than in a hotel room, and it feels like home. Consider renting or borrowing a trailer or RV the next time you travel.

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Adjust Your Expectations

It’s often necessary to alter your ideas of what vacation means, especially if you are new to chronic illness. When you drop your expectations of trying to cram everything in and instead consider what is most important to you, you reduce stress. Work around your needs and routines. I function well most mornings but must nap in the afternoons, so we usually plan something a bit active for the morning and then come back to the camper or hotel room to rest in the afternoon.

Pay attention to your symptoms and adjust your plans accordingly. On a recent vacation to South Dakota, we had planned a short hike at a favorite place one morning, but my son’s Lyme symptoms were badly flared up. So, instead, we drove through the Wildlife Loop at a park and enjoyed a pleasant morning spotting bison, antelope, and more, with almost no exertion. Stay flexible and listen to your body.

Maybe your whole idea of vacation needs an adjustment. Forget the must-dos and try to just enjoy your destination. Relax outdoors, read a book, watch a movie, or enjoy a quiet campfire at night. Redefine your concept of fun.

Focus Your Energy on Fun

With limited energy, you don’t want to waste it. What is most important to you on this trip? Reduce stress as much as possible and focus on your priorities.

That heart rate monitor you used in the airport comes in handy at your destination, too. Use it to help you stay within your limits, so you won’t feel worse from over-exertion. You can also make use of transportation or even rent a wheelchair. Maybe you want to walk around a bit in one area; take a cab or a bus there so you don’t “waste” your limited energy getting there.

I find I naturally feel better when we are vacationing. With no obligations like laundry or grocery shopping and no pressure from to-do lists or the lure of the internet, I can use my limited energy for fun.

Travel is a lot more complicated when you are chronically ill, but it can still be an enjoyable part of your life. Think outside the box and redefine vacations. In over 15 years of chronic illness among three family members, we never stopped traveling or enjoying our annual summer vacation. Understand your illness, take care of your needs, and discard old ideas about what you must do. Relax and enjoy yourself!

Suzan Jackson, a frequent ProHealth contributor, is a freelance writer who has had ME/CFS for 15 years and also has Lyme disease. Both of her sons also got ME/CFS 13 years ago, but one is now fully recovered after 10 years of illness and the other is in college, still with ME/CFS plus three tick-borne infections. She writes two blogs: Living with ME/CFS at http://livewithcfs.blogspot.com and Book By Book at http://bookbybook.blogspot.com. You can follow her on Twitter at @livewithmecfs.

I haven’t visited my family in the UK for years. If I could get there in a pop up camper I’d be off in a heartbeat. But I’ve had too many flights where the person behind me has disabled the reclining mechanism on my seat leaving me crying with pain and exhaustion. And I’ve got to the point where sleeping without my tempurpedic mattress and pillow is impossible. My mother, sister, brother, one daughter and their families are there so this is super difficult.

I’m so sorry to hear that you are not able to visit your family in the UK. Airplane travel is definitely the most difficult, as I mentioned in this article. I have never heard of a person being able to disable the ability of the person in front of them to recline a seat! That’s terrible. I now reclined seats annoy some people, but it is necessary for some of us.

You mentioned the challenge of sleeping away from home. I didn’t mention that in this article, but I have the same problem. I solve it by taking a half an Ambien each night when I travel. It’s the only time I take sleeping pills – when I’m not sleeping in my own bed. It helps a lot.

You didn’t mention which treatments you have tried for ME/CFS and whether you are treating your OI. I included that in this article because it is absolutely essential to being able to travel. I wouldn’t be able to travel at all without first improving my condition with a wide variety of treatments for OI, sleep dysfunction, underlying infections, and immune dysfunction (for starters!).

Maybe this blog post on treatments that have helped my son and I will give you a starting point: